Tag Archives: Parkinson’s Action Network

April is now about halfway over but there is still plenty of time to help raise awareness for Parkinson’s disease and the millions affected.

Parkinson’s disease is a chronic, progressive neurological disorder and the second most prevalent degenerative neurological disease after Alzheimer’s. So far this year, people all over the country have honored loved ones with Parkinson’s disease by helping the Parkinson’s Action Network (PAN) and the other national Parkinson’s disease organizations spread awareness of the disease and its impact on our nation.

PAN, a nonprofit advocacy organization based in Washington, DC, would like thank the hundreds of grassroots advocates who have already asked their local and state governments to proclaim April as Parkinson’s Awareness Month. A sampling of all local proclamations can be found on the PAN website, and you can view images of our grassroots leaders receiving their proclamations from council members, mayors and governors around the country. PAN is also thrilled that our representatives in the U.S. Senate proclaimed April Parkinson’s Awareness Month.

The genesis of the Parkinson’s Action Network goes back to 1987, four years before the organization’s founding. That year, Joan Samuelson left a career in law after being diagnosed with Parkinson’s disease; she threw her might into advocating for people living with Parkinson’s. Four years later, PAN was born, and its successful advocacy continues today.

The Parkinson’s Action Network (PAN) is a unique organization in the patient advocacy world. PAN represents the entire Parkinson’s community on funding and quality of life policy priorities for those living with the disease. PAN works with other national Parkinson’s organizations and is the only organization addressing government programs and policies that impact the Parkinson’s community.

“We’ve worked on a vision that if our community came together on policy issues, with one, singular voice, we would be much more effective,” said PAN CEO Amy Comstock Rick, JD, who became a Research!America Board member in March. “Really in the last 10 years, we’ve been able to effectively achieve that mission so that PAN is the only organization in the Parkinson’s community that works on policy issues, even though we have a number of national organizations.” Continue reading →

Parkinson’s disease affects millions of people worldwide. Patient advocacy groups like the Parkinson’s Disease Foundation and the Parkinson’s Action Network provide resources to patients and advocacy tools to promote more research on this devastating disease. PDF has a toolkit to empower advocates and patients to spread the word, educate themselves and others and learn more about Parkinson’s research funded by PDF.

Meanwhile, PAN is urging advocates to contact their representatives in Congress to support a bipartisan effort to increase funding for the National Institutes of Health; you can also plant a virtual tulip in honor of a loved one and make a contribution to PAN in their honor.

Survivor Margaret Tennent writes on PDF’s patient stories what it is like to live with Parkinson’s:

Research!America President and CEO Mary Woolley joins James “J.P.” Paluskiewicz, deputy chief of staff to Rep. Michael Burgess, MD (R-TX); Cynthia Rice, vice president for government relations, Juvenile Diabetes Research Foundation; Israel Robledo, Parkinson’s Action Network Texas state director; and Lisa Shulman, MD, professor of neurology, University of Maryland in a panel discussion about the power of research advocacy. The panel, hosted by Parkinson’s Action Network and moderated by PAN CEO and Research!America Board member Amy Comstock Rick, JD, discusses how to be an effective advocate and communicate effectively with congressional staff to achieve your advocacy goal.

When asked what makes a good advocate, Woolley advises that we must clearly articulate our case, listen to the decision makers’ questions and answer them as best we can. We should be authentic and personal in our communications. Woolley also notes in her comments that many people can be advocates; in fact, public opinion polls show that the public expects patients, researchers and clinicians to all participate alongside Congress in shaping policy.

For advocates who can’t make it to Washington, DC, Woolley has practical advice on ways to advocate from home. During the congressional recess, lawmakers and their staff typically schedule meetings in their district offices with constituents and hold town halls. Advocates should try to meet with their representatives when they’re home for the recess, tell their personal stories related to research to local media, and submit letters to the editor in hometown papers to spread the message. Support for medical research is one of many advocacy topics discussed on Capitol Hill; hearing the same message from a home district shows our representatives how important the issue is to their constituents. And don’t underestimate the impact of a single email or phone call; the volume and passion of the advocacy message for medical research matters.

Woolley also talks about the need to remember the long-term goal and that this is “an iterative process.” There will be steps forward as well as apparent failures, but we can learn from everything. And with reduced funding for research under sequestration, it is important that medical research advocates continue to work together to promote research advocacy as a whole — not promote one disease or area of research over another — for the benefit of the entire research community and health of Americans.

Advocates should be aware that there is a Congressional recess this week and next, making this an opportune time to speak with your representatives at home!

Watch the full panel discussion for insight and advice from other panel members.

Sequestration is barreling down on us. With the clock ticking to March 1, there are disturbing indications that Members of Congress on both sides of the aisle are prepared to let sequestration move forward. It sounds much too painless to make cuts to a category called “discretionary” — the very word invites belt-tightening — not to mention that this blanket term masks the importance of the programs that would again be damaged (the Budget Control Act took the first swipe at them, and the fiscal cliff agreement, the second). We need to unleash the power of advocacy to put human faces on the rhetoric. We know the reasons research can’t be cut without severe consequences, but do your senators and your representative? It is especially timely to stress the point, made more critical as we heard the news about a decline in GDP, that boosting research investment catalyzes a growth economy.

In this time of critical congressional decision-making, we are very pleased to report that two champions for research, Senator Burr (R-NC) and Senator Casey (D-PA), will join us at our March 13 Advocacy Awards dinner to receive the Whitehead Award for Medical Research Advocacy. Senators Burr and Casey, have — individually and as a bipartisan team — worked extremely hard to promote a robust medical research pipeline in the U.S. and to ensure patients receive new, safe and effective treatments and technologies on a timely basis. Please contact Carol Kennedy if you would like more information about the Awards dinner. Click here to see a full listing of this year’s honorees. I do hope you can join us!

The Huffington Post carried two excellent articles in support of research funding. Dr. Glenn D. Braunstein of Cedars-Sinai describes the impact of NIH research and urges Congress to avoid the “blunt ax” of sequestration. Dr. William Talman from the University of Iowa writes of the eroding buying power of NIH, which shortchanges all Americans on the return on investment and better health that result from discovery. Inside the Beltway, The Washington Post published a piece by Dr. Shirley Ann Jackson of Rensselaer Polytechnic Institute, urging Congress to “invest in what’s next.” Dr. Jackson describes the profound impact that advances in science and technology have had on our lives, many of which would have been impossible without federal support.

While the U.S. is contemplating cutbacks to science, Japan is the latest nation to announce multibillion dollar research investments as part of a concerted plan to jumpstart their innovation economy. This is a significant reversal from three years ago when Japanese lawmakers proposed deep cuts to science as part of a budget control plan. Proposals then led to protests from renowned Japanese researchers — a lesson for those who wish to keep funding for research growing even in an era of austerity. The change in the attitude of policy makers, including Prime Minister Shinzo Abe, can be surmised from his recent quote, “Of course we must aim for number one.” It’s time for stakeholders in the U.S. to do more to prevent counterproductive cuts to our own research enterprise and to assure we maintain our global leadership. I recently participated in a panel convened by the Parkinson’s Action Network that brought out the value, as well as the how-to, of advocacy. You can watch the just-released video here.

With a stellar team of advocates from across the research community, we have been blitzing Capitol Hill this week with our message that we need cures, not cuts. Research!America and our partners have participated in more than 60 meetings with Members of Congress, including key leadership and their staff. My thanks to the 140+ groups that signed on to our community letter to congressional leadership. Many partners have activated their grassroots to join the call Congress day, and there is still time to join the In-District Drop-In day (today) and a social media push on Friday. We also encourage you to keep up the drumbeat with emails and phone calls to Hill offices. Beltway media have taken notice of our ads and the coordinated activity, with articles appearing in The Hilland National Journal.

Based on our meetings this week, the message is definitely getting through that across-the-board cuts or more stringent caps on discretionary spending would hurt our nation far more than help it. But it was also clear that continued, outspoken advocacy is crucial. No option is off the table, and that means we must keep making the case. Staffers told us that providing concrete examples to illustrate what’s at stake is crucial, and no community is better equipped to drive the point home than ours. We saw that yesterday, when, for example, leaders of the Society for Neuroscience gave concrete examples of research at risk, and when advocates from the Parkinson’s Action Network who are living with this incredibly challenging illness described what stalled progress means for them. I am certain – 100% certain – that their advocacy influenced influential people.

The need for many more of us to engage was the message in the lead editorial in Science I co-authored with Research!America Board member and CEO of AAAS, Dr. Alan Leshner. In the editorial, we urge scientists not to stand back, but to speak up for research and make it clear to Congress that “No Science = No Growth,” quoting the words of former NSF Director Neal Lane. Research!America Chair The Hon. John Porter penned a letter to the editor expanding on Lane’s recent op-ed in The New York Times, reminding readers that research dollars are distributed based on peer review to every state and nearly every congressional district in the country. He calls on the lame-duck Congress to overcome partisan divides and step up now to prioritize research.

This afternoon, we are holding our post-election forum and award ceremony for the 2012 Garfield Economic Impact Award at AAAS. We’ll hear from Research!America Chair John Porter, Congressman Mfume, Dr. Mark McClellan and Matthew Cooper of the National Journal Daily. We will be reviewing what we learned about areas of common ground in the Congress from responses to our voter education initiative, Your Candidates-Your Health, and discussing advocacy strategies going forward. View full event details here and join us if you are in DC.

I was saddened to learn of the death of former Congressman Joe Early (D-MA). Rep. Early served for nearly 20 years, championing funding for NIH on the Labor, Health and Human Services appropriations subcommittee, and at every other conceivable opportunity. He was an ardent supporter of Research!America in its start-up phase. We extend our sympathies to his family on their, and the nation’s, great loss.

Monday next week is Public Health Thank You Day, our annual salute to the unsung heroes of public health who keep us safe in so many ways. Please take a minute on Monday of Thanksgiving Week to do a shout-out to people you know who are making a big difference for health. Check out this link for details. And do enjoy Thanksgiving. My letters will resume on Thursday, November 29.